Neuroethics within NeuroDevNet aims to align the exploration and discovery of neurobiological knowledge with human value systems. A key objective is to identify intersecting and unique ethical and social challenges for fetal alcohol spectrum disorder (FASD), cerebral palsy (CP), and autism spectrum disorder (ASD).
The goals outlined below are unified by the imperative to improve the prediction, diagnosis and treatment of neurodevelopmental disorders for Canadian children of all backgrounds in ethical and meaningful ways. They are further linked by discoveries that are needed to inform decisions about interventions and considerations about risk and benefit, decisions about how resources are allocated, and policies to protect privacy and promote well being for children and families.
Our Neuroethics programs
The Neuroethics team provides immediate and long-term support to ensure that the highest ethical standards are met in all domains of NeuroDevNet. Neuroethics encourages critical ethical thinking in all NeuroDevNet projects and proposals, provides ethics guidance, and develops recommendations for best practices throughout the life of NeuroDevNet research projects. Examples of activities are:
- An in-depth study of international research data sharing practices for ASD, CP and FASD, toward the development of robust guidelines for NeuroDevNet’s own far-reaching nodes of collaboration and opportunities for data sharing.
- A national workshop on ethics in the transition from pediatric to adult healthcare services for young adults with neurodevelopmental disorders.
The Neuroethics team pursues a robust program of ethics research that reflects the research priorities of NeuroDevNet projects. Empirical and conceptual research aims to understand the ethical and social impact on stakeholders of current and emerging technologies used in research and in the treatment of neurodevelopmental conditions. Results from research studies inform guidelines for best practices for network investigators and lay the groundwork for future policy-making in pediatric research across Canada. Examples of research include:
- Analyses of ethics challenges in biomarker research and the possibilities of predicting outcomes in children with neurodevelopmental disorders.
- An investigation of how Canadian news media report on FASD, with a particular emphasis on messages about acceptable levels of drinking during pregnancy.
- An investigation on disparities in health research for Canadian Aboriginal children living with neurodevelopmental conditions.
The Neuroethics team engages NeuroDevNet researchers and trainees in activities designed to promote public awareness and understanding of neurodevelopmental disorders and ethical issues in pediatric research and care.
These activities include:
- Internships in science communication in partnership with major news agencies
- Workshops and symposia on key topics such as science and the media; ethical issues associated with the development of genetic biomarkers for autism; and markers of prenatal alcohol exposure in newborns
- The launch of the web-based Conversation in Ethics in Neurodevelopmental Disorders (CEND) Series designed to promote public awareness about topics of concern to patients and families living with neurodevelopmental conditions
Click here for Neuroethics resources.
University of British Columbia
Université de Montréal